Meeting With The Surgeons

Our meeting with the surgeons was today.  In Tulsa, there are two surgeons who do the CT cases together.  We were hoping for a wonderful “we feel confident that he will do well” because that’s what any parent would want.

Instead, we got what is far more realistic…and far more appropriate for Rowan.

Cystic Fibrosis sucks.  With a normal hypoplastic heart repair, this surgery is pretty straight forward.  But they want the kiddos to have perfect lungs.  CF kids don’t have that. 

The major risk and problem with the Glenn procedure is building fluid in the chest.  Those of you who have been following our story know that we have been there, done that, and it was a major complication from his first surgery.  That CANNOT happen this time, because if it does, there is no way for him to get fixed…because he’s already had that surgery…and you can’t do it again.

So #1 – less than perfect lungs

#2 – history of trouble with fluid…

= not a lot of hopeful and inspiring insight from the surgeons.

The good news is that we should know pretty quickly if his body tolerated the Glenn…like…during the operation they will find out.  He will go on the heart/lung machine during the surgery.  If he can’t get off that…we’re in trouble.

If during the surgery his Glenn fails…we’re in trouble.

If Rowan’s body doesn’t drain fluid from his head well enough as a result of this procedure, he is at high risk for stroke and brain damage…and we’re in trouble.

So where are we?

Rowan will die, and soon, without this surgery.

With this surgery, Rowan may die…but it’s his only hope.  So the surgeons are willing to try.

Sound familiar?

Pretty sure we had the same thing going on about 5 months ago.